Hi, I'm curious as to how many, if any, of you have had a DVT/PE? The reason I'm asking (bear with!) is that about 14 years ago I had a popliteal artery aneurysm removed from behind my left knee, where I also have a venous malformation in the calf. I had DVTs off and on for years until the aneurysm removal, and 6 years ago I had acute spontaneous PE and a saddle embolism. Oh and a stroke 12 years ago due to a hole in the heart (it's been such fun!). I'm now on lifelong anticoagulation and I recently had a full gene panel ran to check me for all vascular disorders (vEDS/Marfans etc) which came back negative. However - curiosity came calling last night, as it does, and so I googled about these popliteal aneurysms and guess what came up?! Ehlers Danlos! Which makes total sense given our stretchy blood vessels right? I was diagnosed with hEDS 2 years ago, but in all the 15 years of me having life theatening events, no one ever mentioned connective tissue. I've had every haematology test going several times, angiography, MRI, CT scans, seen private rheumatology, neurology and orthapaedic specialists all over the country - you name it! So, I may be very behind the curve here, and this could be a well known thing, but I just wondered if it was something anyone else had to deal with? Also, weirdly I felt like this somehow validated my Ehlers Danlos diagnosis, what's that all about?? This blooming condition never fails to blow my mind! All these years of being told I'm a medical mystery!

Posted by rachellowe at 2023-08-17 09:52:20 UTC